Attn: Valcyte Users

Discussion in 'Fibromyalgia Main Forum' started by foxglove9922, Apr 6, 2007.

  1. foxglove9922

    foxglove9922 New Member

    Hi All,

    I think I'm still on track to start Valcyte on 5/1/07. My physician feels I'm a prime candidate due to a recent reactivated EBV, high titers CMV and HHV6. Negative on Lyme testing and after 2 1/2 years on AB my mycoplasma infection resolved.

    So, here's my questions for those of you who are into the treatment:

    How long before you experienced a response (herx) on Valcyte?

    Did you follow the Montoya protocol; 900 mg 2 times a day for 3 weeks and then 450 mg twice a day from that point on?

    Is anyone feeling better on Valcyte and at what point did that happen?

    How long did the exacerbation of CFS symptoms last before you began to level out on the Valcyte?

    I know, so many questions. I complete my first semester of college on 5/8/07 (part time, only 6 credit hours but given the serverity of my CFS, quite challenging) but thought I could start the Valcyte on 5/1 since I'm signed up for one course this summer beginning 5/30......should I wait until after my finals on 5/8 to begin or is the herx reaction delayed.

    As always, I recongnize we are all a little bit different on how we react to meds and I'm fairly certain my herx will be big given my viral load.

    Many thanks to any of you here that can respond and best wishes to all.

    Foxglove
  2. cherylsue

    cherylsue Member

    Good luck to you, both in school and on the Valcyte.

    You might want to check the posts of "gasolo." He is a surgeon on the this site who has been taking Valcyte for about 9 weeks now. He has had some promising results.

    Hugs,

    CherylSue
  3. foxglove9922

    foxglove9922 New Member

    Many, many thanks Kelly for sharing your story and for the the information and well wishes. I too had a devil of a time of it on Valtrex at 1000 mg for about 5 days,,,,can only imagine what Valcyte is going to bring. I have a very limited support group, but have lined up a ladies group from yoga that will bring me food. My boyfriend (not live-in who runs a golf course) is a wonderful man but extremely busy in the summer. I know he will help when he can and my daughter will help me with tea, water, and bathing. Basically, I'm on my own but have a high determination. I'm very lonely living alone and getting out 2 times a week for 4 hours total to go to school this summer will hopefully be my saving grace.

    CherlySue,

    Thank you ever so kindly for the well wishes. You're soooo sweet. How are you doing on Nexavir? Did you make it back to work? Think you were planning on 4/4?

    Gasalo,(Gar)

    If you're around, just curious how it was in the beginning for you?

    Foxglove
  4. Slayadragon

    Slayadragon New Member

    Hi Foxglove,

    Thanks to you (and Kelly) for reminding me that 1000 mg of Valtrex is a relatively high dose.

    I think that 1000 mg of Famvir (the amount I'm taking) is equivalent to about 2700 mg of Valtrex. Thus, being able to tolerate it must mean I'm getting somewhere.

    I'm of the impression that Valcyte has a huge die-off until at least week 6 or so. You can look up Gary's (gasolo's) posts too, but (since he was able to keep working throughout) I'm not sure you can count on tolerating the medicine as well as he has.

    I would advise you look up the user name of:

    patrickj

    PJ wrote back in January about a friend of his who was a patient of Dr. Montoya's. The description made it clear that the experience was really intense.

    stovetop also said at various times that her experience was extremely intense, and she was taking 1350 mg the whole time with no loading dose. She was in bad shape before she started and sounds like she pretty much zoned out totally for a number of weeks. I believe she was living at home during this time, and so had a good deal of support.

    (I hope I'm not saying anything that's at all inaccurate about Stovetop's experiences, by the way. I would direct you to do a username search for her too, but at one point she deleted a bunch of the most relevant posts.....)

    Hopefully by the time I start Valcyte (which my doctor still seems to want to try for me), my viral load will be chipped away at enough that it's not as unbearable. I'm going to plan for the worst when I do it, though.

    In the meantime, I highly recommend that you work very hard on getting whatever yeast you might have under control. I worked on this a lot prior to starting the Famvir and feel it was one of the things that helped me the most.

    People have been talking a lot about yeast on the board recently, including new ways to rid oneself of it. Let us know if you want more info, therefore.

    BTW, you're not planning to take an antibiotic or another antiviral at the same time you're on Valcyte, are you? The only person I've heard of whose had bone marrow problems on Valcyte was taking that other stuff in addition to it. The Valcyte is potent enough at the beginning that I'd be disinclined to add anything to it, just to be on the safe side.

    (Note: Kelly, were you taking that antibiotic when you were first on Valcyte???)

    i'm glad that you're doing okay at present.

    Best, Lisa

    [This Message was Edited on 04/13/2007]
  5. Ginner

    Ginner New Member

    keeping for ref.
    Thank you
    Gin
  6. FM58

    FM58 New Member

    Hi Foxglove,

    Aren't you one of Dr. Levine's patient's? Are you going to be taking the Valcyte her typical way - or Dr. Montoyo's protocol?

    I can not speak for Montoya's protocol, however, I can tell my experience per Levine's protocol. (450mg 2x per week for 1 week; 450mg per week)

    I experienced herxing weeks 3 through 5. So, if that is the protocol you will be on- starting 5/1 sounds safe to me. Even w/ the Montoya protocol, most seem to herx around week 4 or 5, a few start around week 3. So, I seemed to have been rather similar to most others & herexed the typical weeks 3 through 5.

    It seems like you should be safe starting 5/1 - then having your break from week 2 through week 5. Well, starting classes during week 5- that really shouldn't be too bad. How many summer classes are you taking?

    Best of luck foxglove! Hope Valcyte works for you & Good Luck w/ your finals! :) :) :)
  7. Slayadragon

    Slayadragon New Member

    Have you improved as a result of the Valcyte? Are you still on it?

    Thanks!

    Best, Lisa
  8. foxglove9922

    foxglove9922 New Member

    Again, a huge thank you to all that replied.

    FM58,

    Why do you suppose Levine has opted to do 1800 mg for only a week when Montoya does 1800 mg for 3 weeks? Did she give you any explanation on this? I can't even begin to thank you enough for all the valuable information you gave me. Considering the herx is delayed with Valcyte, I may even bump my start date a week up to 4/24. I'm taking one class this summer, Chemistry.....not my forte so I will have to be focused. It's really the only thing besides my body I have to contend with so I'm fairly confident I can manage a 2 hour outing twice a week. It's the homework that can be gruelling a college level. Seems like 4 hours homework for every hour spent in class, but I'm looking forward to the challenge. As Lisa asked, how are you doing? How far along into the protocol are you? Do you suffer from CFS and FM? How disabled were you prior to treatment? Sorry for so many questions, but I can only extend a huge thank you for all the information and many best wishes on your road to recovery.

    Lisa,

    As always, a HUGE thank you for all that you provide. I hope my yeast is under control. My last candida test was fairly good. In the beginning, yeast was a huge problem for me as I was ABX for 2 1/2 years for the myco. I have however quit smoking a couple of weeks ago and my sweet tooth is acting up terrible,,,,it's a real effort to drive past the Dunkin Donuts that just opened up down the street. So far I have not given in to temptation and hope to maintain my current slim state. I will not be taking any other AB or AV during my Valcyte treatment. I will, however, continue HGH injections and Klonopin until I start to feel better.....hoping to wean down off of both. Still take Darvacet ocassionally for the body aches.......usually, I'm able to stave them off with yoga. Are you still considering taking the Valcyte? And if you are, when?

    Best wishes to all,

    Foxglove
  9. Mikie

    Mikie Moderator

    I find it interesting that it took 2 1/2 years for both of us to get control over the mycoplasma infections. Dr. Nicolson, in an e-mail, told me that the mycoplasma can deposit cysts deep in body tissue and that if we get run down, the cysts can reactivate. I still keep Doxy on hand and if I feel the symptoms' returning, I will do a week on them. That seems to work.

    Again, good luck and let us know how you are doing.

    Love, Mikie
  10. cherylsue

    cherylsue Member

    I read your posts and am so glad you are starting the protocol with Dr. Levine. It was good to hear that you are getting the yeast and smoking under control. Bravo! I know several people on this board have been using Cream of Tartar per Dr. William Wong's protocol for yeast. It is supposed to work in 30 days. You can check on it here by doing a search for same.

    You have come a long way the past few years. I'm delighted to hear you are still continuing with college.

    I hope the Valcyte works for you and gives you a better recovery. BTW, how is your daughter doing? Her youth is on her side for a recovery.

    Hugs,
    CherylSue
  11. Slayadragon

    Slayadragon New Member

    My doctor increased my Famvir dosage to 1000 mg at my last visit. This is equivalent to about 2700 mg of Valtrex.

    I still was getting significant die-off from Famvir (even at 500 mg), and so I guess that he thought that I could still get some use out of it.

    He has significant experience with Famvir (4+ years) and seems to feel comfortable with it. He's just been using the Valcyte since last summer.

    Maybe he thinks even a high dosage of Famvir is less toxic than a relatively low one of Valcyte?

    It also could be that he thinks that if I can kill as many bugs as possible with the Famvir, then the amount of time I will have to spend on Valcyte before my own immune system starts working (his goal) will be minimized. That would decrease resistance potential, making the chance that it will work if I need it again lower.

    (Of course, I don't think anyone has demonstrated any resistance at all to Valcyte thus far. It may be that it kills pretty much everything.)

    Anyway, in mid-March he said to use the Famvir for 2-3 months and then come back to see him. His plan is for me to switch to Valcyte at some point.

    Note that the only reason that I've been able to tolerate the increased Famvir is because I've started taking an extremely small amount of human growth hormone every day. Somehow this has helped tremendously. I sleep all the time and feel very subdued, but all my other die-off symptoms are pretty much gone.

    I take about 1/3 of an iu. The minimum recommended under ordinary circumstances is 2 iu, and so obviously this is something I'm very sensitive to.

    I don't know if this would be helpful to other people on antivirals, but it would be interesting to know. My HGH was left over from a previous experiment with it, but I think to buy it would cost something like $200 per month. (Most insurance companies balk at paying.)

    My intestines were quite yeast-free also, but I've had problems with nasal yeast since I've been sick. Last year I got a vaginal yeast infection that has recurred on occasion as well. And, I found, yeast can hide in other organs (like the kidneys) as well.

    I've been getting a large die-off in these areas in the past several days through the use of cream of tartar. Candidase is supposed to have systemic effects too.

    (Everything I've used before has been restricted to the digestive tract rather than getting through the whole body. Diflucan does get into the rest of the body, but most of my yeast became Diflucan-resistant years ago.)

    I may be biased from my own experience with Famvir, but I think restarting classes according to your plan might turn out to be overambitious. However, I would imagine you could skip it if you weren't feeling up to it by then?

    It's good to hear from you.

    Best, Lisa
  12. foxglove9922

    foxglove9922 New Member

    Many, many thanks again to all that responded. I'm really trying to get a feel for when I should start the Valcyte and still maintain my lifeline,,,,,college at the moment. I find it hard to be on the board much as it's crunch time in school....last day is in the beginning of May.

    Mikie - I briefly read your post about your remission,,,,hats off to you and I sincerely hope this stays with you.....you've been a tremendous help to me over the years and a remission couldn't have come to a better person than yourself. You have been a wealth of information and kindness....bless you for all that you do. I too find the 2 1/2 year Doxy parallel interesting as well as the fact that I still pulse Doxy for a week when I feel symptomatic.....don't ask me how I know when it's needed, I just know and it works. Fortunately I've only had to take Doxy 3 times in the last year. I'm fairly convinced now that if I can get the viral load under control, my own immune system may be able to kick in and recognize bacteria in a normal fashion.

    CherylSue, As I said, I not here much lately. Between school and the brief respite my boyfriend has before golf season gets into full swing, I've been busy. Basically, he's tired from working long days so it works out well that we are tired when we see each other. Mostly we go to the movies or dine in or out and watch TV. Thanks for the kudos on the smoking thing, it's a battle. I wonder if I'll be able to continue when I hit the downtime on Valcyte? Are you back to work? Feeling better? Still doing the Nexavir? Best wishes to you,,,,,you've been a true internet friend on this tough road with CFS....thank you for all that you do.

    Lisa, So happy to hear that the HGH is giving you some relief. I've been on Humantrope for over 3 years and find it helps with my muscle pain (my physical build is amazing on this stuff) and I inject at night (the same time HGH is normally produced by the pitutary) and find it has helped some with sleep. I started out at .1 something and am now doing .3 as my IGF-1 was 36 when I started (Normal for a woman my age (50) is 88 - 360 so I was very, very low,,,,read that 3 day old cadavers can still produce up to a 40) WOW,,,,,,1000 mg of Famvir...my sincere best wishes that you are able to tolerate the dosage and achieve good results! As I said before I'm not on much lately,,,,,is there anyway you could give me a brief synopsis of the cream of tartar thing. If it's too lengthy, please just let me know and I'll search when I find the time.

    Also, for anyone else who's currently traveled the Valcyte road, I'm looking for when the EXTREME downtime was for you. I looked back at a few other posts and it appears the major herx happens between weeks 2 and 5....does that sound right?

    My sincere best wishes to all and many thanks,

    Foxglove
  13. foxglove9922

    foxglove9922 New Member

    bump for responses
  14. foxglove9922

    foxglove9922 New Member

  15. Slayadragon

    Slayadragon New Member

    Hi Foxglove,

    I'm glad that you bumped your post back up. I remembered a couple of times that I had neglected to respond to it, but always at odd times. So sorry!

    Have you thought about whether you should pulse the doxy once you go on Valcyte? Whenever I think of the idea of doing antibiotics and Valcyte at the same time, it reminds me of the fact that the only person I've ever heard of who's had to go off V because of bone marrow problems was also taking an antibiotic (plus Valtrex). Combining those kinds of treatments seems to me really hard on the body. But if you listen to what your own body is telling you once you get into the thick of things, I'm sure you'll make the right decision.

    (Whoops, on re-reading I just noted that you're planning not to take the doxy while on Valcyte. I need to pay more attention.)

    On the other hand, the combination of HGH and Famvir has been superb. I'm really glad to hear you're taking it already.....based on my experience, that should give you a leg up on surviving the Valcyte and maybe (though I certainly wouldn't place money on it!) allow you to get back to your life in reasonably short order.

    Will your doctor let you go up on the dosage if it seems like it might help? I'm tolerating (and needing) a whole lot more HGH than I could before I started, which (come to think of it) is the one improvement I've seen since "before AV." You wouldn't think that tolerating HGH was an accomplishment, but Dr. Cheney once said that none of his patients could tolerate more than a drop. So maybe I'm making progress.

    Note that my IGF-1 was normal the last time I had it tested. (It was moderately low--although not as low as yours!--a few years ago.) So if the HGH has been so helpful to me, I would think that giving yourself enough (since your body might make even less when it's under the Valcyte stress) might be crucial for you.

    I've found that I've needed to go up on the Klonopin at certain times on the Famvir too. Plus I've added melatonin. This appears to be par for the course, and my doctor thought that was the best combination. He thinks that once I'm done with the AV's, I shouldn't need any sleep meds either.

    I thought that 1000 mg of Famvir was good too, but today my local internist (who is CFS interested and has experimented with AV's a bit) said he thought that with my viral problem I would need more like 4000 mg for it to work. Obviously an impossible amount. However, the idea of knocking off a bunch of junk with the Famvir and thus not relying on the Valcyte as much is seeming increasingly viable and clever. I wish that I were seeing _progress_ in terms of how I'm feeling, but the drug is most certainly doing something. My doctor seems to think that slow and steady wins the race, and I'm hoping that he's right. Or that it at least ties, anyway.

    That's so smart of you to get people to bring you food! Hopefully you won't absolutely need it, but having some sort of support mechanism seems essential with this drug.

    I've not seen fm58 back on the board, but I'm wondering if she meant 1800 mg the first week and 900 mg after that. 450 mg per day seems pretty low.

    I also am under the impression that Dr. Levine has been experimenting with different doses (or maybe adjusting them due to her assessment of the needs of different patients). For a while I thought that she was following Dr. Montoya's protocol to the letter, but recently there seems to be a shift.

    Unfortunately it's hard to go back and retrace since a lot of the posts on Valcyte have been deleted by patients on the drug who got flipped out for one reason or another with regard to how the conversation was going. Which, by the way, is another thing to think about with heavy die-off on AV's: they cause severe emotional lability. This is normal too, and my doctor thinks that eventual mood improvement (including motivation) increases as a result. If you accept it as par for the course, hopefully it won't get to you as much as it has some of us on occasion.

    I wouldn't count on being focused the first week you're taking Valcyte. I found that I didn't get a major die-off on Famvir for a couple of weeks, but that I was extremely sleepy that first week. This is especially the case since you had such a big die-off with Valtrex. (Most people don't respond overtly to that drug at all, and so your big reaction--like mine to Famvir--suggests to me big viral loads.) Note Kelly C.'s (empty2void) note that she started getting symptoms within a few days. That's hardly what I'd want to be happening when I was taking a test.

    As for cream of tartar.....I'm not sure how I feel about it at this point. It seems pretty obvious that it kills intestinal yeast, and I feel confident that it kills sinus yeast directly as well.

    If you kill intestinal yeast eventually the sinus yeast is affected, but since I've never succeeded at totally getting the intestinal yeast under control---does anyone with CFS?---my sinus yeast (and occasionally recurring vaginal yeast) has continued to be a problem.

    Unlike the usual yeast measures, cream of tartar seems to get throughout the body and kill yeast everywhere. You'd think that would be good, but after about a week, I started to wonder.

    For one thing, killing sinus yeast directly is quite a bear.....far worse than killing intestinal yeast. Maybe it's because the die-off is so close to the brain. The mental symptoms are fierce. Combined with the Famvir, it turned out to be too much.

    The other thing is that I'm not sure how cream of tartar works. One theory is that it acidifies the whole body. I'm not crazy about that thought.

    So I've decided to switch to Candidase for the time being. One capsule a day (the recommended amount is six). I think it gets throughout the body too, but since its method of action seems more clear to me (it uses enzymes to dissolve the yeast's cell walls), I feel a little more comfortable with it.

    If that doesn't work though, I'll go back to the cream of tartar eventually. Getting rid of that sinus yeast is really important, regardless of the short-term cost. Obviously now's not the time to do something stressful, but eventually I will get there.

    Keep in touch, especially after you start the Valcyte. Please come visit my threads, and I will try to keep a closer look out for yours.

    Best, Lisa

  16. foxglove9922

    foxglove9922 New Member

    lisa,

    I'm short on time today, but did read your post and am trying to wrap my struggling brain around everything. It's getting close to the end of the semester and the pace has picked up tremendously. I am, however, carrying a 3.80 average....yippee.....but it takes everything I've got to do it. Thankfully, it's given me a purpose in life and has helped with the isolation I felt.

    I agree with your thought process......if I had such a time of it on Valtrex at a rather normal dose (1000 mg) I'll probably have a real rough road for a bit with the Valcyte so I'm going to put off the start date until 5/9, the day after my Algebra final. It really does make sense now that I think about it.

    I have a few questions for the doc so I'm going to send an email off to her this week.....ie. why 1800 mg for only a week when Montoya does 1800 mg for 3?

    I am so happy that you are seeing results with HGH. I did as well in the beginning, but like everything else, I've just plateaued.

    I'm hoping as I progress through the Valcyte treatment and start to see the light on the other side that I can start to decrease pain meds, Klonopin, and HGH.....I know this is in the distant future, but I remain hopeful.

    I too just started thinking my yeast problem has resurfaced. All my fault, too. Boyfriend has a sweet tooth as well as myself and I've catered to it and am paying a price for it. I've had luck before with a product called Yeast Cleanse and will start this weekend as I normally experience a fairly severe die-off.

    Again, a HUGH thank you for your input. Hopefully, soon I can follow the board more closely, but for now my life is full, given my limitations with CFS.

    Wishing you all the best,

    Foxglove
  17. Slayadragon

    Slayadragon New Member

    Hi Foxglove,

    It sounds like you're making the best of your life at the moment, which (except for that sugar!) is great. Heavy die-off on AV's is hard, and probably it helps if you're in good emotional shape beforehand.

    Congrats on your GPA. It sounds like the school has been really good for you.

    Best, Lisa

  18. gasolo

    gasolo New Member

    I,m finishing my 9th week on Valcyte. I began having herxing type of symptoms starting about 2 weeks. The most severe symptoms lasted approximately three weeks. I basically was at bed rest during that time. I started to improve to my pre-valcyte level at week seven. Presently my conditions appears to fluctuate daily. Some symptoms are valcyte/herxing type and others are just my cfs type.
    Personally It would have been very difficult to study during the first 8 weeks of treatment. Even now it takes a herculean effort to concentrate at a high level.
    I'm following Montoya's protocol with a starting dose of 1800mg/day for three weeks and then 900mg for an additional 5months. It is not clear why this dosing protocol was used. In the treatment of cmv retinitis (active infection) , valcyte is used in a similar way. Since there is essentially no information concerning valcyte and cfs in the literature I,m guessing Montoya is treating cfs as an active viral infection. Lesser dosing schedules may be equally as effective although there is no evidence to support this in a clinical trial. Montoya's clinical study is too small to use different doses. Hopefully in the future when or if valcyte proves to a be good treatment for cfs, different doses will be studied.

    Gary
    [This Message was Edited on 04/12/2007]
  19. foxglove9922

    foxglove9922 New Member

    lisa,

    Thank you for the well wishes. It does seem like many, especially, women have had emotional problems while on this medication. I saw this from previous posters that became agitated and left the board. I'm glad you mentioned this and will be alert to this phenomenon should it happen to me. Fortunately, I have a fairly good constitution and hope I can keep that part of it in check.

    Gary,

    I was hoping you'd come along. Thank you for the information. I'm curious why some herx immediately and others have a delayed reaction. Given you medical expertise,,,,,any thoughts on that? My previous experience on AVs usually result in an immediate response and will proceed with the assumption that Valcyte will respond accordingly. I just responded to your 8 wk Valcyte report. Good to hear that you seeing improvements and my sincere best wishes that you continue to improve and please do keep us posted.

    Foxglove
  20. Slayadragon

    Slayadragon New Member

    Hi Stovetop,

    Glad to hear that you're still holding steady. Considering how far you've come, that's actually really great news.

    Are you starting to feel like you're adjusted to being back in the world yet? I hope that transition is going well.

    I'm sorry that I didn't recall your Valcyte dosage. I'm going through a phase of die-off in which my cognitive abilities are not very sharp, and that could account for part of it.

    I've not seen a big enough sample size to know if women are more emotionally labile than men when on Valcyte (or other AV's). If they seem that way, it could be that men express it in other ways, like just withdrawing.

    If you ever have time (and I know you have lots of other things you want to do now that you're closer to being really well!), would you consider filling out your bio with some basic info about your Valcyte experience? Just stuff like:

    * How you were doing before Valcyte
    * When you started
    * Dosage you took
    * Doctor you used
    * Experiences throughout usage (timing and nature of die-off symptoms, when improvement started, when you went back to work, things that helped you get through the process, stuff you wish you knew before you started---whatever)
    * What your life has been like as you've gotten better (e.g. level of functioning, biggest issues you've dealt with)
    * Whether (and how--e.g. pulsing?) you've stopped or when you plan to stop the medicine
    * Additional treatments (if any) that you think might have helped you

    Obviously this is a long list. I just made up a bunch of questions---I wouldn't expect you to answer all of them.

    However, this kind of info obviously would be really useful for people pursuing the Valcyte/antiviral path. And if it were in your bio, then there wouldn't be any chance of misinformation occurring.

    Anyway, I'm really glad that you stopped by! Good luck to you too.

    Best, Lisa